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Brain weather

Brain Weather

When my liver progressed to cirrhosis, ammonia began to build up in my body. The first thing to go was my brain. Loss of short-term memory was so severe that within several weeks, I could no longer keep up a conversation. When anyone spoke to me anything longer than a sentence or two, I would lose the whole thing by the time they got to the end. At first, people thought I’d lost my hearing – I was always asking them to repeat themselves, so they’d talk louder. When it didn’t help, I was accused of not paying attention. For awhile, I tried pretending I understood. This didn’t work at all with Wifey – the love of my life. She would give me directions for stuff she needed me to do when she was at work – make a doctor appointment, take something out of the freezer, get ramen noodles from the grocery store, pick up my Klonopin. This stuff never got done. Besides forgetting, sometimes I’d misunderstand what she said: “You want me to beat the cat?” My state of mind began to cause conflict in my family. As my thinking deteriorated, other neurological problems kicked in. Loss of balance and proprioception caused me to fall down, frequently and suddenly. I’d just be walking in the park with Wifey and without warning, I’d fall and roll down a hill. At first, I’d get back up and continue on, but over time, the surfaces I fell on seemed to get harder, like the sidewalk leading to my back door. I never broke anything, but I did get banged up. I figured it was time to go to the doctor.

He called it hepatic neuroencephalopathy. At the time of diagnosis, I couldn’t pronounce the word without causing a spasm in my tongue. By then, I was drooling slightly as well, so that saying words like that dampened whoever I was talking to. The doc wiped my spittle from his face and said I had ammonia overload – something I could say without spitting. He gave me a special laxative (that’s how your body gets rid of ammonia) called Lactulose, which I could not tolerate. It comes in liquid form. I’d swallow it out of a Nyquil-type cup, and immediately throw it back up. I know – that’s gross, but not nearly as gross as things would get by transplant time.

It was the summer of 2013. The falling episodes had passed for a time. I was sitting outside in the early evening eating barbecue pork with my family. Something stabbed me, right on the crown of my head. I slapped it – some kind of bug, no doubt. I felt two small indentations, like a spider bite. Next morning, the sting had become a painful itch. Of course, I couldn’t leave the thing alone. I’m a picker – a lying picker at that. “No way – I haven’t been picking,” I told my dermatologist. He rolled his eyes at me and said it wasn’t even a bite, but a porphyria blister. (Porphyria Cutanea Tarda is a blistering disease that often accompanies liver problems.) Anyway, I didn’t believe him. I was sure I’d been bitten by some scary bug. I picked at the thing until my scalp bled onto my shirt. Wifey was getting concerned about my behavior. I told her that not only had something bit me, but it had laid eggs in my scalp and they were gonna hatch soon. I was terrified.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Susan Simon moderator
    4 years ago

    Barry, no matter how ill, tired, brainless you are, I love the way you write. I never knew just how bad you were getting. I am so thrilled that you got that liver and are still here with us today. We hope to see you soon…..Sue Simon, Moderator.

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